Sir Tim Berners-Lee wants healthcare data to be open by default to support more medical breakthroughs and establish accountability in open data use in clinical trials.
The inventor of the World Wide Web made the declaration during a press roundtable attended by V3 and hosted by the Open Data Institute (ODI), which Berners-Lee co-founded.
“I want to use this opportunity to put in a big plea for clinical data being by default available for research,” he said.
Berners-Lee explained that opening up the clinical data of individuals is a sensitive issue, but that the advantages outweigh the concerns.
“Masses of clinical data about individuals can be ridiculously useful when you’re doing research or trying to run a trial,” he said.
“If you have access to, for example, a history of all the clinical trials people have done with different compounds on different patients, you can find yourself in a situation where you want to use a particular drug in conjunction [with a disease] and you can understand a whole lot about it just by running back over old clinical trials [data].”
He added that open data in healthcare can allow more computer-modelled clinical trials to be carried out based on aggregated data, rather than requiring masses of traditional medical trials.
Berners-Lee said that a form of accountability could be set up to allay any fears of open data use infringing on the privacy of individuals, whereby people have records on what their data has been used for and which doctors and medical staff have accessed it.
“When you do that, this makes individuals much happier to make their data available,” he said.
Big open data
The government has expressed an interest in opening up more public sector data, and individuals need to be encouraged to adopt it.
V3 asked Berners-Lee, fellow ODI founder Sir Nigel Shadbolt and ODI chief executive Gavin Starks how open data adoption can be encouraged in enterprises that may be very protective about their data.
They agreed that businesses wishing to stay competitive must embrace open data or risk being overtaken by their rivals.
Berners-Lee cited the example of retailers slowly opening up more of their data to improve the service offered to internet shoppers through machine learning, and said such data-driven automation is forcing enterprises to adopt open data and not rely on their own data supplies.
“Business is being automated, and business automation means a faster transfer of data,” he said. “Now if you don’t have data about your products out there you disappear.”
Shadbolt and Starks explained that businesses currently put an emphasis on big data rather than open data.
“There’s a sense in which people are now talking about big data as the answer. There’s this assumption that with some big engines running on their data lakes they will get insight,” said Shadbolt.
Starks added that the companies that embrace open data ahead of big data collection and analysis will stand ahead of their rivals.
“Right now we’re in this weird bubble where big data is a vendor-created and vendor-driven term with huge amounts of marketing money being spent on it,” said Starks.
“We’ve had companies say to us they are going to do big data first, which is a clearly nonsensical statement to make, but it gives you a real sense that they see open data as this fluffy thing at the end, rather than as an essential mechanism for the future of their business.
“So the companies that will win are the ones that understand that first and start to embrace the largest community.”